I'm autistic, ask me anything

[AyEssDee]

You, AyEssDee, mentioned that "Social interaction is hardest when I have to talk to more than 1 or 2 people." Do you think it also has to do with how you grew up? For example if you were to come from a really small family, it'd be natural never to talk to more than 1 or 2 people at a time when you're at home, so to some extent I think these issues could very well come out of habit too. I think my dad might have had "Asperger's" but it didn't exist as a diagnosis at the time, yet, and has obviously been discontinued now, as a diagnosis, for some reason.

Can you describe what you mean when you say you "fell apart" as a teenager, and did you parents have the same diagnosis do you think, had the diagnosis been invented back then and if they had gone to their GP and asked about it? If so, do you think you as a small child copied their "odd" behaviours, the "odd" part of their "asperger"-inspired behaviours had they shown any of these? Your parets being your role model while growing up, I mean, it'd be natural to pick up a trait or two.

Is there something that in hindsight you wish someone would have done for you or said to you?

As a parent of an awesome HF Autistic girl what advice do you have for me to help me steer her future profession?

Hi, I would love to pursue diagnosis privately as you have, but have no family to fill in questionnaires about my childhood, which I believe is a requirement for an NHS diagnosis (if I could even get on a waiting list) Did your assessment include these? I’m also unsure of the cost involved. But it’s something I really feel I need to do.

I'll respond to everyone else later, but Exhausted and Tired, yes, ideally, an "informant" should come along to the assessment to talk about childhood. Obviously that's ideally a parent or other close relative who is able to give reliable information.

My parents are abroad and don't speak English, so that wasn't an option. I wrote down my childhood experiences at length, including translated accounts of my mother's views and brought my husband aling on the day (he is definitely NT).

How has your husband coped with your asperger related traits? Has it affected him?

I ask because I suspect my DH has Aspergers and I'm finding it hard to come to terms with. He is emotionally distant and can't understand anything from my perspective.

I'm a big fan of this fellow Aspie - this article she's written sums me up pretty well, too:

www.collegehumor.com/post/7056647/15-truths-about-being-high-functioning-autistic#

Floradoranora

Yes, I know about Lorna Wing's daughter.

I think Dr Gould knew too after the initial vetting and speaking to me for a bit. I hardly think LWC are giving out bogus diagnoses!

WickedLazy

Do you stim? I often rocked back and forth as a child/teen, I didn't even know I was doing it. I would even do it when I was engrossed in a book or TV, that or jiggle my knee. I hated my hair hanging round my face, and would sit with my hair clipped up on top of my head, and the hood of a hoody pulled up, at home. My mum used to tell me off for both, and say it was weird, (and the chewing holes in the sleeves of all my jumpers). She admitted recently she probably should have had me tested (I check a lot of boxes on all the tests, always felt like the odd one out).

Yes, I stim. My stimming has become less obvious and noticeable over the years, but I twizzle my hair, bite and pick the skin around my fingernails (not the nails) and constantly need to fiddle with something when I'm in the company of others (except close family).

What were your top five "symptoms"?
Always having felt like the odd one out and alien; having trouble with social interactions (yes, the triad of impairments applies to me); struggling with sensory overload (noises, crowds, certain materials); obsessive behaviours (these have changed over time, e.g. counting steps, HAVING to do an even number of steps, etc.); echolalia.

Takemetovegas

Is there something that in hindsight you wish someone would have done for you or said to you?
As a parent of an awesome HF Autistic girl what advice do you have for me to help me steer her future profession?

I wish I hadn't been criticised and told off all the time for being weird as a child and teenager. I wish my disordered eating had been investigated and not ignored. I wish my - quite bad - depression as a teenager, manifesting in school avoidance and an almost complete shutdown, plunging my school grades from excellent to failing, hadn't been ignored by my parents. I wish they had taken an interest and tried to find out what was going on.

Be patient and understanding. Try to see what works for her and help her achieve her potential - pretty much the same as for any young person, but in her case, you may need to advocate a little bit or a lot more. Just listen to her and be there for her.

RainSim

How has your husband coped with your asperger related traits? Has it affected him?

He has been amazing and is the best husband ever, honestly. He is and has been my rock. He understands me (or tries his hardest, haha) and gives me the space I need. I know I am very lucky.

I ask because I suspect my DH has Aspergers and I'm finding it hard to come to terms with. He is emotionally distant and can't understand anything from my perspective.

I am the opposite of emotionally distant, so can't really help from that angle. People on the autism spectrum are as varied in personality as other people. I hope you find ways to understand each other better.

Did you find any books helpful - seen any aimed at girls with Aspergers?

I’ve never investigated I’m asking on behalf of my dd but when I read about the modelling/copying that high functioning aspergers girls do, lifelong friendship issues including hiding at break and meal times so I didn’t have to interact, eating disorder history etc and that I’m a systems analyst who’s best at making sense of huge amounts of information on my own...

Oh one more question: in what way do you think aspergers differs from extreme introversion? My DH argues that a lot of the aspergers girls gets are a sign of introversion.

387I2

You, AyEssDee, mentioned that "Social interaction is hardest when I have to talk to more than 1 or 2 people." Do you think it also has to do with how you grew up? For example if you were to come from a really small family, it'd be natural never to talk to more than 1 or 2 people at a time when you're at home, so to some extent I think these issues could very well come out of habit too. I think my dad might have had "Asperger's" but it didn't exist as a diagnosis at the time, yet, and has obviously been discontinued now, as a diagnosis, for some reason.

I am from a standard-sized family. Born in the early 70s, mum (housewife), dad (worked long hours), one sibling. Relatives/cousins nearby. Played out in the street with (or more alongside) other kids, tended to have one close friend.

I don't think my family environment has caused my autistic traits, no.

Can you describe what you mean when you say you "fell apart" as a teenager, and did you parents have the same diagnosis do you think, had the diagnosis been invented back then and if they had gone to their GP and asked about it? If so, do you think you as a small child copied their "odd" behaviours, the "odd" part of their "asperger"-inspired behaviours had they shown any of these? Your parets being your role model while growing up, I mean, it'd be natural to pick up a trait or two.

I don't think my parents share any autistic traits, no. I can think of an aunt and/or uncle though who might tick some boxes. I always felt criticised and misunderstood by my parents and very different to them as well. They weren't into reading, I really really was though. They weren't into music, I badgered them into letting me take recorder and piano lessons and practised on my own initiative. They didn't go to grammar school and didn't show any interest in me going either, but I did (I had to persuade them aged 10). If there wasn't this unmistakable family resemblance, I'd swear I was adopted.

Sleeplessmeanderer

I can recommend (specifically regarding girls/women):
Aspergirls by Rudy Simone
The State of Grace by Rachael Lucas
My Box-Shaped Heart by Rachael Lucas
Odd Girl Out by Laura James

also:
Neurotribes by Steve Silberman

I guess many people with Asperger's can come across as extremely introverted, but not all are.

If there are problems with social interactions (including at school), it is worth investigating. Maybe have a read of Aspergirls?

I’ve got aspergirls and also taking dd for private assessment (hates school, school refusal, obsessive collecting of things) but thanks for the other recommendations.

Yes dd is more like me in that she wants to join in, but she finds it really hard to go to things (the going) and warming up, and then she doesn’t want to leave sometimes once she’s in.

sounds a bit like my DD... good luck

FieryGinger, you are obviously incredibly angry at your life circumstances and the circumstances of your son, but please try to bear in mind that AyEssDee did not do this to you! She has a diagnosis. The Diagnosis is autistic spectrum disorder, She's not different to your son to spite you, it's a spectrum, it's in the name. Stop attacking her!

What are your views on ABA?

huha

What are views on ABA?

I have no personal first-hand experience of it.

In the documentary "Aspergers and Me", Chris Packham visits an ABA Center in the US - that made for really uncomfortable and unsettling viewing. The clinical person there spoke about autistic kids as if they weren't real people and the "ABA" looked a bit like dog training to me.

If ABA is able to be used positively, I guess it can be beneficial?

Can't comment comprehensively though, sorry.

I'm trying to decide whether a diagnosis would help my DS(8). He is intelligent, loves reading, maths & science but cannot concentrate in a classroom. I suspect sensory processing disorder as he hates crowds, noise, heat, cold etc. He has poor co-ordination (rubbish at ballgames, but can cycle, swim, tie tie, shoelaces etc). He struggles socially, which is what I find most difficult for him. Private mainstream school is keen on a diagnosis. Previous state school said he was just anxious/shy etc.
I can't decide if a diagnosis would help or hinder him long term. What are your thoughts?

ItWillAllBeOkayInTheEnd

I am in favour of investigating and assessing, given he is struggling as you say.

Diagnoses are not given out on a whim and are not barriers but should mean access to tailored help. If he has a condition that warrants a diagnosis, the condition will be there regardless - but he may struggle even more without suitable accommodations.

Thanks. I'm still mulling it over. Do you (or anyone) know if the standard for diagnosis is lower if you go private? The private headteacher is adamant he would get a diagnosis, whereas the state headteacher was adamant he wouldn't. Do you think that is just a difference of opinion, or do NHS & private have a different point at which they would say he has a disorder?

What does a diagnosis even look like, as we are all on the spectrum somewhere? Is it a number, and below X is considered a disorder and above X is 'normal'? And can X change depending on who carries out the assessment?
So many questions 😕

Sorry, also meant to say his school say they are giving him all the support he would get with a diagnosis anyway.

Surely regardless of what any HT thinks, you’d want the opinion of a clinical psychologist/psychiatrist/someone qualified to make the assessment?

Thanks a lot for your reply! Just to clarify, how you describe your feeling of empathy and difficulty expressing it in an "accepted" way corresponds entirely to what I was told when I did my autism awareness training. I have since tried to challenge comments about people with ASD not having empathy. However, I was beginning to doubt myself when a fellow teacher said "I think X is on the spectrum, he definitely lacks empathy"